Hospice Girl Friday – The Saturday Evening Posthttp://www.saturdayeveningpost.com
Home of The Saturday Evening PostFri, 16 Feb 2018 20:38:40 +0000en-UShourly1https://wordpress.org/?v=4.8.5Hospice Girl Friday | Planning for ‘After’http://www.saturdayeveningpost.com/2014/02/14/health-and-family/hospice-girl-friday-planning-for-after.html
Fri, 14 Feb 2014 13:00:33 +0000http://www.saturdayeveningpost.com/?p=97297Planning for the future after a loved one's passing can help friends and families cope with their loss and see a way forward.

Devra Lee Fishman’s dear friend and college roommate, Leslie, died from breast cancer one month shy of her 46th birthday after a four-year battle with the disease. Being with Leslie and her family at the end of her life inspired Devra to help care for others who are terminally ill. Each week, she documents her experiences volunteering at her local hospice in her blog, Hospice Girl Friday.

Most of the conversations I have with hospice patients or their family members are focused on the past and instigated by me. I like to learn about the patients, and I want family members to remember who their loved ones were before the shadow of disease began to darken their lives. Recently I had a surprising conversation about the future with the husband of a patient who was admitted at the end of my Friday morning shift. The patient was Bernice Scott. Seventy-one years old. Heart disease.

Mrs. Scott’s husband Robert came in with her, toting her favorite red-striped crocheted afghan and her medical records. I greeted him at the front desk.

“My wife is in pain and needs medicine right away,” he said as he watched the stretcher carrying his wife disappear into room one.

“The nurses are with your wife right now. They’re going to do an assessment and talk to the doctor about medication right away,” I said, trying to sound assuring.

His brow did not unfurl. “Where is the doctor?” he asked, looking around.

I walked around the desk to guide Mr. Scott to the sofa. “The doctor is with another patient right now. May I get you a cup of coffee?” He shook his head no as he lowered himself onto the sofa. I tried to warm him up with small talk, but he was too far away to respond with anything other than single syllables. I could tell he did not want me there.

Most patients come to the hospice in crisis. And while hospice is meant to make dying patients comfortable at the end of their lives, one of my roles is to help make their family members and loved ones comfortable as well. Unfortunately, at that moment there did not seem to be anything I could do to ease Mr. Scott’s emotional pain, so I sat down next to him for just a moment and said, “Your wife is in good hands. I’ll let you know when the nurses are finished, and if I can help you with anything in the meanwhile, please ask.”

Once the nurses finished in room one I gave the Scotts some time to get used to their new surroundings before knocking on the door. When I walked into the room Mrs. Scott was lying flat with her eyes closed. She must have heard me come in because her eyes popped open and she asked for peanut butter and marmalade. She must have been feeling better if she was asking for food.

When I came in the following week, I asked the nurse for an update on Mrs. Scott and was told that she was sleeping a lot and had stopped eating the previous day, which is usually a sign of impending death. When I walked into her room, Mrs. Scott seemed to be comfortable, taking long, deep breaths as she slept. Mr. Scott was sitting in a chair next to the bed with a book on his lap, which he closed when I walked in. This time he was ready to talk.

“Coming here was the best thing we could have done,” he said. “My wife is much better, out of pain. Now it is just a matter of nature taking its course.”

“I’m glad to hear it,” I said. “How are you doing?”

“Also better, but I am going to miss her.”

“How long have you been married?”

“Forty-two years. All of them good. Great, in fact,” he said, smiling. “I retired in 2005 so we could travel and go to museums. But five years ago my wife got sick and encouraged me to consider working again in some way, so I went back to school for a teaching degree. Now I teach college classes Monday through Thursday, which will keep me busy. I will go to a museum or a lecture on Friday. Weekends will probably be difficult at first, and I am not looking forward to the quiet that will greet me when I come home and turn the key in the door. Also I have a friend who is a widower and likes to travel, so I said I would go wherever he’d like. And I’ve been seeing a psychologist, which has been very helpful.”

Instead of talking about the past, it was important for Mr. Scott to explain to me–and possibly reassure himself–that he was prepared, that he would be okay after his wife passed. In the hospice we never know when death will come, we only know that it will. That moment often defines ‘before’ and ‘after’ for the people who are left behind.

I have talked to many family members who have told me they can’t imagine a different life or will not be able to go on without their loved one. I try to help them conjure positive memories that might help temper their dreaded grief. Mrs. Scott’s husband knew that she would pass away first, leaving him to forge a new routine and fill the silences her absence would bring. I admire the way he looked to the future and systematically put together a plan for ‘after,’ which also seemed to help him cope with his beloved wife’s last days and moment of death.

]]>Hospice Girl Friday | ‘Staying True to Yourself In the Face of Illness’http://www.saturdayeveningpost.com/2014/02/07/health-and-family/hospice-girl-friday-staying-true-to-yourself-in-the-face-of-illness.html
Fri, 07 Feb 2014 13:00:31 +0000http://www.saturdayeveningpost.com/?p=97063"I am going to do everything I can to still be me while I go through this.”

Devra Lee Fishman’s dear friend and college roommate, Leslie, died from breast cancer one month shy of her 46th birthday after a four-year battle with the disease. Being with Leslie and her family at the end of her life inspired Devra to help care for others who are terminally ill. Each week, she documents her experiences volunteering at her local hospice in her blog, Hospice Girl Friday.

The first time I brought Hazel, my brother’s Guide Dog Foundation puppy, into the hospice with me we visited several patients at the nurse’s request. One patient in particular responded so positively that I brought Hazel in again a few weeks later. This time I was looking forward to introducing Hazel to Lizzie Goode-Hart, a 30-year-old patient with pulmonary fibrosis–someone with whom I was becoming friendly and who I thought might enjoy Hazel’s company.

Most patients only stay in the in-patient unit for a few days before they go home or pass away, but Lizzie was becoming one of our rare long-term patients. I had several conversations with Lizzie and always left my shifts feeling uplifted and impressed by her positive attitude and ability to live her waning life so fully. Normally I try to maintain a compassionate distance when interacting with hospice patients in order to avoid getting close to someone I would only know for a short while. With Lizzie, I was drawn into her positive energy right away and knew that I could learn a great deal from her about living and dying gracefully. Early on I made the decision that I would rather risk the grief that would come from losing her than deny myself the gift of getting to know her.

The fourth week of Lizzie’s stay I knocked on her door and walked in with Hazel. “I brought someone to meet you,” I said. “This is Hazel. My brother is raising her to be a service dog.”

Lizzie was sitting up in bed with her computer and two cellphones on her lap, just as she was when I left her the previous week, but her room looked completely different. The bed was covered in a turquoise and coral comforter and Lizzie was leaning back on large matching throw pillows. A geometric print rug covered the floor and on the shelf above the bed were several framed photographs, a dried flower arrangement, and a 12-inch tall wooden statue of smiling Buddha. A floral scarf covered the shade of the single floor lamp which now bathed the room with a cozy, warm glow. I felt like I was in her bedroom at home.

Hazel walked over to the bedside so Lizzie could give her a big hug. “What kind of service dog will Hazel be?” Lizzie asked, looking at Hazel. I quickly ran through my mental checklist: Lizzie’s voice was strong; her eyes were bright and clear; her breathing quiet. All green lights for me to stay and visit with her.

“Probably a seeing-eye dog, but she might be a companion to a veteran. Depends on how her training goes.”

“My cousin is raising a service dog,” Lizzie said, “a German Shepherd. When I first got sick and wasn’t breathing well on my own, my cousin brought the dog over to stay with me. Do you know, that dog slept on my bed and whenever my breathing slowed to a dangerous pace, the dog woke me up so I would start breathing again?” Lizzie was petting Hazel as she talked. “It’s so great that your brother is raising Hazel. I’m sure she’s going to help someone who needs a companion like her, just as my cousin’s dog helped me.”

We continued to talk for several minutes about a wide range of topics–Lizzie asked question after question–before she glanced at her watch and said, “I’m so excited. My hairdresser is coming in a few minutes to color and style my hair. I don’t know how long I’ll be around, but as long as I am I want to look good, you know?”

I nodded, but I was thinking, ‘Why bother?’ Then I decided to continue the conversation that Lizzie started since she talked so openly about the fact that she was dying.

“I have often wondered, when would I stop caring about how I look? If I were terminally ill, would I keep getting my hair cut every three months? Would I say ‘yes’ to dessert more often? When would I stop flossing my teeth?”

Lizzie laughed at first and then said, “I decided I am not going to let this disease kill my soul. It is killing my body, but no ma’am, not my soul. So I am going to do everything I can to still be me while I go through this.”

“Well, you go girl! You’re an inspiration to me and to all people living with a lousy disease,” I said.

This exchange was unlike others I have had with hospice patients in the past. I encourage most people, including the patient Hazel helped previously, to talk about themselves so they can remember who they were before they became hospice patients. Lizzie had a unique way of making a conversation much bigger than herself, as though she wanted to broaden her world as much as she could.

Lizzie was about to say something when we heard a tap on the door. A woman about Lizzie’s age walked in carrying a small tool box and a blow-dryer.

“You must be the hair stylist we’ve been waiting for,” I said, tugging on Hazel’s leash and leaning over to give Lizzie a hug goodbye. “See you next week,” I said.

As I drove home I wondered if Lizzie seemed different to other patients I’ve met because I decided to approach our relationship more openly, or if it was because she actually is unlike any of the others. Either way, I am still glad that I have let my guard down to make this personal connection, which I hope is enriching Lizzie’s life as much as it is mine.

Devra Lee Fishman’s dear friend and college roommate, Leslie, died from breast cancer one month shy of her 46th birthday after a four-year battle with the disease. Being with Leslie and her family at the end of her life inspired Devra to help care for others who are terminally ill. Each week, she documents her experiences volunteering at her local hospice in her blog, Hospice Girl Friday.

A few months ago I went into the hospice on a Wednesday to sit vigil for a patient whose elderly mother wanted to ensure her daughter did not die alone. When I arrived I ran into the hospice chaplain who told me about a new patient in room four.

“She is a young woman and is delightful to talk to. If you have some time, you might like to go say hello,” he said. I stopped by her room before I left, but did not knock because I heard a number of different voices talking and laughing inside. Instead I made a mental note to see her in two days when I came back for my regular shift.

I found her name on the census. Elizabeth Goode-Hart. Pulmonary Fibrosis. Thirty years old. I asked her nurse about the diagnosis since I had never heard of it before.

“Is it caused by anything specific?” I asked.

“No, it’s a crap-shoot-disease as you would say. She enjoys company, but I was with her yesterday when she got into a dry-coughing jag that was very difficult to stop. Please be mindful of that if you go see her.”

Since hospice care focuses on symptom management and comfort, I rarely see patients in distress other than when they first arrive. My first reaction to the nurse’s warning was fear that I might weaken with panic if Miss Goode-Hart started to cough or choke so I busied myself with the other patients until I felt confident that I would know how to appropriately respond. When I have moments of doubt like that I take a quick inventory of other patients I may have helped and remind myself that I am experienced and emotionally strong enough to know what to do.

I made my way over to room four and knocked on the door as I walked in. The patient was sitting up in bed wearing brown pajama bottoms and matching t-shirt under a pink chenille robe. A laptop computer was open on the bed in front of her next to two cell phones. I was struck by how young and energetic she looked.

“Okay, Lizzie. It is nice to meet you,” I said, looking away as I said her first name out loud. I was uncomfortable being on a first-name basis with her. My friend Victor, a former hospice nurse, taught me to call the patients by their last names to avoid getting emotionally involved while caring for them. “Getting too close can cloud our judgment,” he said. “I call it ‘compassionate distance.’” I wondered how I would manage calling Miss Goode-Hart by her first name.

“You look like you’re busy here in your home office so I won’t stay long,” I said. “Just want to make sure you’re comfortable and ask if there is anything I can get for you right now.”

“I’m fine,” Lizzie said. “I am trying to stay connected to people and get some work done. So many people are calling and emailing and texting so there are a lot of interruptions.”

“Oh, well I don’t want to be another one,” I said, taking a step back toward the door.

“Please do not go,” Lizzie said. “I like being connected to people so I am not complaining.” Her eyes were clear and bright, but her breathing in between words was slightly labored. She picked up the oxygen mask on her bedside table and took a couple of deep breaths into it before continuing.

“I am so grateful to you for volunteering,” Lizzie said. “We do not do enough for each other in our society.” She looked like she had more to say but she started to cough. I was relieved when she stopped after three or four dry hacks and immediately started to talk again. “As I was saying, we do not do enough. Some people do nothing and others just get by doing the minimum….” She started to cough again before she could finish her sentence. This time she coughed eight or nine times.

“Should I get the nurse?” I asked as soon as she stopped.

“No, I’m okay. I just need a second,” Lizzie said, closing her eyes.

“Does talking cause you to cough? Maybe we should stop chatting,” I offered.

She nodded then said, “Talking makes me cough, but if I use my last breath sharing with you like this I will die a happy woman, so please don’t go yet.”

I stayed with Lizzie for only a few more minutes. She started to thank me again for volunteering. I interrupted her and insisted that I would do most of the talking so she could rest.

“You’re sweet to thank me,” I said, “but truth is, it is an honor to be a volunteer here. I bet all of the other volunteers would say the same thing.”

“Why?”

“Because we get to work with hospice doctors and nurses who are the most compassionate, dedicated people I’ve ever known.” Lizzie nodded in agreement. “And, because we get to meet people like you.”

A long coughing jag took over before I could tell her how inspiring she was for knowing how she wanted to live until she took her last breath. I quickly left her to get a nurse and did not see Lizzie again before my shift ended.

Driving home I thought about Lizzie. She is the kind of person I would want to be friends with so why let my rule of ‘compassionate distance’ stop me from getting to know her now? Lizzie’s openness about her fate and her eagerness to connect to people is refreshing, and I am strong enough to witness–and if possible to help–her live while she is dying.

]]>Hospice Girl Friday | ‘When a Child is Terminally Ill’http://www.saturdayeveningpost.com/2014/01/24/health-and-family/hospice-girl-friday-when-a-child-is-terminally-ill.html
http://www.saturdayeveningpost.com/2014/01/24/health-and-family/hospice-girl-friday-when-a-child-is-terminally-ill.html#commentsFri, 24 Jan 2014 13:00:44 +0000http://www.saturdayeveningpost.com/?p=96424With multiple rounds of chemo and its accompanying misery, when does a kid get to be a kid?

Devra Lee Fishman’s dear friend and college roommate, Leslie, died from breast cancer one month shy of her 46th birthday after a four-year battle with the disease. Being with Leslie and her family at the end of her life inspired Devra to help care for others who are terminally ill. Each week, she documents her experiences volunteering at her local hospice in her blog, Hospice Girl Friday.

My mom called me over the weekend to tell me about Kelly, her manager’s daughter. “She finally died, after twenty round of chemo and 5 surgeries,” my mom said, with an audible exhale full of sadness. “At one point they even removed one of her kidneys. Poor little thing.”

I had never met Kelly, but I felt like I had since my mom and I had talked about her so much over the two years since Kelly had been diagnosed with neuroblastoma, a dangerous yet common childhood cancer. That was right after her third birthday and right around the time most three-year-olds are learning to catch a ball and ask important questions like ‘Why is the sky blue?’

My mom thought that Bob, her manager, avoided confrontation at any cost, and she was frustrated by the way some of her co-workers seemed to take advantage of him on a regular basis. But when Bob came back from a long absence and told his team that little Kelly had cancer, my mom changed her attitude. After that, whenever my mom complained about work all I had to say was “Yes, but his daughter has cancer,” and her frustrations about Bob melted away into compassion.

“How is Kelly doing these days?” I’d ask.

“She’s on a new chemo that is making her sick, but Bob said they are going to stick with it. I hope they’re not chasing rainbows.”

“Mom, I can’t imagine what they’re going through. It must be impossibly difficult for everyone.”

“You’re probably right, but I just feel so bad for the little girl. She is sick all of the time from the chemo treatments. They keep taking her up to New York for surgeries. When does she get to be a kid?”

“I think Bob and his wife are trying to make sure she gets to be a kid. And a teenager. And a grown-up. How does a mother give up on her child’s future? You never would have been able to when we were little. You wouldn’t even now that we’re all grown.”

“Of course I wouldn’t,” my mom said without hesitation. “I just feel so badly for that little girl.”

There is a natural order to life: we are supposed to outlive our parents. It was my mother who first pointed that out to me when my friend Leslie was told there were no more treatments available to try to beat her cancer. Leslie’s parents were with her when she died a month shy of her 46th birthday. They are still outliving her.

I do not have kids so I know I will never understand how a parent might feel at any and every stage of a child’s life. But I have watched my own parents’ hearts soar with every high and break with every low that one of my brothers or I experienced. No one in my family has ever had to go through what Bob and his wife went through with Kelly (knock on wood), but I asked my brother David what he would have done if one of his now-grown sons was diagnosed with cancer at a young age. Would he let his child have some quality of life, or would he chase a cure?

“I would pursue every possible treatment, making any sacrifice necessary, even if it meant risking my own health and well-being,” David said. “Not doing so would not even enter my mind. Your thought of providing some quality of life is a consideration, but not at the expense of finding a long term solution or cure.”

David’s answer did not surprise me. My guess is my other brothers, who have two kids each, would say the same.

My hospice is for adults only so I have no experience with parents choosing–or not choosing–hospice care for their children. Still, most of the patients I see did not choose comfort care for themselves. They are in hospice because they exhausted all curative treatments available to them. Some patients have accepted their fates (not all loved ones have, however). Others are in denial or angry at the world or their god or their bodies for being so unfair. Modern medicine has done wonders to keep us alive longer than ever before, but now we are so ill-prepared to face death I often wonder if I would choose to forgo treatments that might prolong my life yet make me so sick I would not enjoy living, or if I would prefer to make the most of whatever time I might have left.

If I think I would have trouble making that decision for myself, I cannot begin to understand how Kelly’s parents could make any other decision than the one they did for their little girl. It’s a decision they will sadly have to live with–without her–for the rest of their lives.

Devra Lee Fishman’s dear friend and college roommate, Leslie, died from breast cancer one month shy of her 46th birthday after a four-year battle with the disease. Being with Leslie and her family at the end of her life inspired Devra to help care for others who are terminally ill. Each week, she documents her experiences volunteering at her local hospice in her blog, Hospice Girl Friday.

I knew the in-patient unit would be busy on Christmas so I signed on to take an extra shift. There were already five patients when I got there and a sixth was expected. Around noon, Holly Gold was rolled into the hospice accompanied by two of her daughters. One of them was fighting back tears and unable to respond when I said hello. The other introduced herself as Joanne, who told me she held power of attorney for her mother’s healthcare and that their mother needed pain relief immediately.

“She is suffering from heart failure and has been comfortable at home,” Joanne said. Her words came out quickly, probably powered by pent up anxiety. “Last night she took a bad turn and hasn’t stopped moaning and crying. She needs to be admitted. Is the doctor here?” Her eyes darted around as she looked for a medical professional. I don’t think my volunteer badge offered the kind of comfort she needed.

Many family members panic when they first arrive at the hospice because patients usually come here in some sort of physical distress. About half are already receiving hospice care at home so their family members are familiar with how it works, but Mrs. Gold and her daughters were new to hospice. The doctor had warned me that they were very concerned about their beloved mother. “The family is very close,” she had said, and she asked me to convey a calming confidence when they arrived.

“The doctor called right before you walked in,” I said to Joanne. “She wanted me to tell you she will be here within 30 minutes. In the meanwhile, we are going to get your mother settled. The nurses are in with her right now. I promise you, she’s in good hands.”

Joanne and her sister both thanked me, but I could tell Joanne was still nervous by the way she fired out questions. “Don’t we need two doctors to verify that my mother has less than six months to live? Do we have to wait until that happens to start treatment? Do you need a copy of my mother’s Advance Medical Directive? I have it here.” When she stopped to take a deep breath, I jumped in. I pointed toward the sofas with an arm outstretched to indicate we were going to walk in that direction.

“The doctor has already admitted your mother. I will take a copy of whatever paperwork you have, and someone from the hospice team will be here shortly to go through the rest of the admission process,” I said as I sat down on one of the sofas. Joanne and her sister followed my lead.

As we talked, several people walked into the hospice and came over to where we were sitting. Joanne introduced them as two more sisters and the patient’s nine grandchildren. She explained they were a very close family and had traveled from all over the States to be together over the winter holiday break. I went back to my desk to photocopy Joanna’s papers while she led a family meeting in the living room area. She explained that her mother left very specific instructions about the kind of medical treatments she did and did not want. Everyone nodded along as though they already knew about Mrs. Gold’s directive. Some of the grandchildren asked questions. Others offered comfort to their emotional family members. In spite of their grief, they were kind to each other the way I wish all of our patients’ families could be, the way I hope my brothers and I will be when our turn comes to deal with our parents.

Because most patients come to our hospice in crisis–that is the purpose our in-patient unit serves–they and their family members are often unprepared for the reality of end-of-life care. Whatever family dynamic exists continues to play out in the hospice. My friend Daisy says ‘As we are in one thing, we are in all things.’ I would agree and also add that crisis brings out who we really are, not who we hope we are or who we pretend to be. Which brings me back to me and my family.

After my friend Leslie died–in hospice, in crisis–I sat down with my parents and asked them if they had any plans for end-of-life care. We had never discussed the topic as a family, and I wanted to make sure they received the kind of treatment they wanted. More importantly, I wanted to make sure that my three brothers and I were not left to fight about the kind of healthcare our parents would or should receive if they were not able to speak for themselves. I assured my parents, who raised four strong-willed, very different children, that we would be together but we needed them to do us and themselves a big favor by taking the burden of such enormous decisions out of our hands. They understood because they have witnessed our many disagreements over the years.

I now have the same paperwork for my parents that Joanne Gold had for her mother. The forms articulate my parents wishes and put me in charge of carrying out those wishes if my parents can not. My brothers and I might not be as close as the Gold children and grandchildren, but we will be united on our parents’ side when the time comes for us to say goodbye to them.

]]>Hospice Girl Friday | ‘The Loner’http://www.saturdayeveningpost.com/2014/01/10/health-and-family/the-loner.html
Fri, 10 Jan 2014 13:00:04 +0000http://www.saturdayeveningpost.com/?p=96222Sometimes just sitting with a patient is all the human contact they will allow.

Devra Lee Fishman’s dear friend and college roommate, Leslie, died from breast cancer one month shy of her 46th birthday after a four-year battle with the disease. Being with Leslie and her family at the end of her life inspired Devra to help care for others who are terminally ill. Each week, she documents her experiences volunteering at her local hospice in her blog, Hospice Girl Friday.

At the front desk of our hospice there is a notebook in which volunteers keep track of pertinent information about–and regarding interactions with–patients or their family members. These notes are part of the larger hospice files and allow us to catch up quickly on the current patients as we start our shifts. On a recent Friday morning I read about one patient who was described by the admitting nurse as ‘a bit of a loner.’ According to the notes, the patient in room 10 was an artist, had no local friends or family, and preferred to be left alone. Her name was Elaine Engle. Sixty-two years old. Jewish. Breast Cancer. Her 91-year-old mother who lived in New York City was listed as the emergency contact.

As I read about Miss Engle I glanced up and noticed her door was closed. The nurse must have seen me looking puzzled because she explained that we were honoring the patient’s request for privacy. “She’s sleeping and non-responsive, so if you go in there to check on her, don’t announce yourself or touch her. Try to be as unobtrusive as possible.”

Most of our patients have a spouse, a child, or a friend who stops by on a regular basis to visit and help make healthcare decisions. We expect that in the hospice. I started to wonder about who might be there for me since I have no children and my husband is much older than I am. If I outlive him, will I wind up alone like Miss Engle? The thought upset me so much that I avoided Miss Engle’s room until the very end of my shift.

When I went in she was so still and quiet that I had to watch for several seconds to make sure she was still alive. Her body was curled up facing away from the door, and she barely moved underneath the sheet as she breathed. I reported what I saw to the nurse who said, “She probably won’t be with us much longer.” Instead of feeling relief that Miss Engle’s suffering would soon come to an end, I felt sorry for her. Not just because she was alone, but also because she chose to go through life–and death–that way. I also felt a tiny pang for myself and hoped I would not wind up alone in a hospice like Miss Engle.

Two days later I received an email from my supervisor asking for volunteers to sit vigil with Miss Engle. The request came from the patient’s mother, who was unable to travel and wanted to make sure her daughter died with someone by her bedside–a Jewish tradition designed to ease the fear of uncertainty and the pain of separation for both the dying and the bereaved.

When I sit with dying patients at the hospice I like to interact with them somehow so they will feel a caring presence in the room. Miss Engle made it clear she did not want that, but her mother did, and I wondered if I could I satisfy both dying wishes at the same time. I tried to convince myself that I could not by coming up with several reasons why I should ignore the email: the long commute to and from the hospice; lunch plans I did not want to change; errands I wanted to run.

Eventually I realized these were all empty excuses designed to help me avoid thinking about my own end-of-life scenario. I thought about Miss Engle’s mother and how difficult it must be for her to lose her only child and not even have a chance to say goodbye. I responded to my supervisor’s email and asked to take a shift early the following morning.

When I arrived at the hospice Miss Engle’s nurse was coming out of room 10. She was all business. “The patient is resting comfortably,” the nurse said. “Please remember you’re here to be a presence for her mother. Don’t talk to or touch the patient. Feel free to read or watch television with the sound off if you’d like.”

While these instructions were counter to my training and instincts as a hospice volunteer, I obeyed. I sat facing away from Miss Engle after moving my chair away from her bedside. Occasionally I looked up from my book to check on her breathing and gauge her comfort level. The first time I felt an impulse to interact with Miss Engle I thought about how important it was to her to be left alone, and I reminded myself how important it was to me to carry out her wish. Then I finally realized that there was nothing sad about Miss Engle’s desire to be left alone. She was simply managing her death by defining her terms.

Since that day I have been thinking about what my terms would be. I wonder if I would want any of my friends or family members sitting vigil for me, or if I would like them not to bother, to continue living their own lives. I’m still not sure, but I have made a New Year’s resolution to figure that out and then communicate it to my friends and family so they won’t have to bear the burden of deciding for me. I may not be certain about whether I want them around when I die, but I know I want–and am grateful–to share my life with them now.

]]>Hospice Girl Friday | ‘The Power of Compassion’http://www.saturdayeveningpost.com/2014/01/03/health-and-family/the-power-of-compassion.html
Fri, 03 Jan 2014 13:00:49 +0000http://www.saturdayeveningpost.com/?p=96084Choosing hospice is difficult enough, but it is far from the last tough call a patient and family members will need to make.

Devra Lee Fishman’s dear friend and college roommate, Leslie, died from breast cancer one month shy of her 46th birthday after a four-year battle with the disease. Being with Leslie and her family at the end of her life inspired Devra to help care for others who are terminally ill. Each week, she documents her experiences volunteering at her local hospice in her blog, Hospice Girl Friday.

In addition to the nine private patient rooms in my hospice there is a large living room that is separated from the administrative area by half-walls that corral off the space. The volunteer desk is closest to the sofas where hospice staff often meet with family members to discuss patient status and care. I overhear those difficult conversations when I am at the desk and I always wonder how the doctors, nurses, and social workers learned to compassionately deliver the kind of news that no one ever wants to receive.

Last week Peggy Barre was in room 11. Seventy-five years old. Kidney cancer. She had come to the in-patient unit from home care the previous evening because her family noticed she could not get comfortable. When I arrived, the nurse asked me to sit with Mrs. Barre, who kept trying to get out of bed. “Sometimes it takes a little while for a new patient to settle in. Mrs. Barre’s husband is on his way, so we’re hoping she will calm down when he gets here,” the nurse explained.

The nurse walked into the room with me and introduced me to Mrs. Barre, who had one foot hanging over the side of the bed and was trying to push herself up off of the mattress. Her eyes were open wide as though she was looking at a frightening faraway ghost, and she did not acknowledge me when I spoke. Her anxiety and anguish were typical symptoms of terminal restlessness, a type of delirium that is fairly common in dying patients. Trying to get out of bed and pulling out oxygen tubes or IV ports are the most common symptoms I’d seen as a hospice volunteer, telltale signs that death is imminent.

Sitting with Mrs. Barre I was reminded of how my friend Leslie kept throwing off her bedclothes toward the end of her life and in a final burst of energy opened her eyes and demanded “Get me out of here, Devra.” At the time I had not heard of terminal restlessness and simply believed her beautiful, buoyant soul was trying to get out of her diseased body. As she pulled off her oxygen tube I got as close as I could and responded. “Leslie,” I said, “I am trying to help you get out of here. We all want to help you get out of here,” I said, looking around the room at her family. “Please, you are free to go.” I wanted to assure her–and myself–that we were all supportive of her need to leave. And we were, because by then cancer had won the battle and we all wanted Leslie’s suffering to end.

I held Mrs. Barre’s hand as she relaxed against the pillows for a few moments, and then popped up with a start over and over again. Each time her facial expression pulled back tighter and tighter. I was lifting her left leg back up onto the bed when her husband and daughter came into the room.

“She’s been very restless, like she has someplace to go,” I said. “I’ve been trying to keep her from getting out of bed.” I stood up to make room for them to get closer to Mrs. Barre, and then I quietly went back to my desk. A few minutes later Mr. Barre came out of the room to talk to the doctor who was already waiting for him on one of the sofas.

“Your wife seems very agitated,” she said. “She has been thrashing around a lot and her body is full of tension, particularly in her face. Did you notice how frightened she looks with her mouth pulled back tight and her eyes open wide and unfocused?”

Mr. Barre nodded quietly then said, “She was fine up until last night. What happened?”

“With late-stage cancer, symptoms can change abruptly,” the doctor explained, making direct eye contact with Mr. Barre. “The pain and anxiety medications that we have been using are no longer working to keep your wife comfortable.”

“So what do we do now?” Mr. Barre asked.

The doctor sat forward, took Mr. Barre’s hand and said, “Your wife’s symptoms indicate to me that she is suffering from terminal restlessness, an emotional and physical struggle we see in some patients as they transition. Given the tense, fearful look on her face and the way she is constantly startled and trying to get out of bed, I think the kindest thing we can do for your wife right now is sedate her.”

Mr. Barre started to cry. After a few moments he asked, “If we do that, will she ever come back?”

“No, she won’t,” the doctor explained, still holding Mr. Barre’s hand. “But her disease is at the very end stage so she is not going to come back either way, which is why I believe sedating her is the kindest thing we can do.” The doctor repeated her recommendation to make sure Mr. Barre understood. They sat quietly for a few more moments and then the doctor suggested Mr. Barre discuss the option with his daughter before making the decision.

We expect that once a patient commits to hospice care (or is committed to it by a loved one), death will be peaceful and the journey comfortable. After all, that is the very premise of hospice. Mr. Barre was not prepared to make any further ‘final’ decisions beyond choosing hospice care. Very few people are. I have never had to make that decision for myself or for someone I love, but when the time comes–and the time will come–I hope to have a reasonable, compassionate doctor like the one in my hospice to guide me through what could be a very difficult process.

]]>Hospice Girl Friday | ‘The Things I Never Knew’http://www.saturdayeveningpost.com/2013/12/27/health-and-family/the-things-i-never-knew.html
Fri, 27 Dec 2013 13:00:40 +0000http://www.saturdayeveningpost.com/?p=95913As Devra learns new things about a recently departed friend–he was a high-ranking navyman; he knew Tom Clancy–she realizes that getting to know someone, no matter how little time she might have with them, is a chance to enrich her life.

Devra Lee Fishman’s dear friend and college roommate, Leslie, died from breast cancer one month shy of her 46th birthday after a four-year battle with the disease. Being with Leslie and her family at the end of her life inspired Devra to help care for others who are terminally ill. Each week, she documents her experiences volunteering at her local hospice in her blog, Hospice Girl Friday.

Recently my husband and I attended the funeral of Frank, a former community band mate of ours who died from brain cancer earlier this year. Frank’s wife also plays in the band and the four of us would often chat as we walked to our cars after our weekly rehearsals. We weren’t close friends and never saw each other socially outside of band, but after I saw Frank struggle to walk into rehearsal one evening I reached out to Betty and offered to come over to sit with Frank while she ran errands or just took a break from her 24/7 caregiving. Frank dozed the entire time my husband, Jim, and I sat with him but woke up to say goodbye just as we were leaving. Frank passed away the following week. He was 64.

Frank retired after 20 years in the navy and wanted to be inurned in Arlington National Cemetery, the hallowed and hauntingly beautiful burial ground a few miles from where we live. Because of his rank, Frank was sent off with full military honors that included an escort platoon, a colors team, a military band, and a horse-drawn caisson that carried Frank to his final resting place. Jim and I were honored to be there and surprised by what we learned about Frank’s life and legacy from his eulogists.

We knew Frank was a submariner, but we did not know that he retired as a commander. After he retired, he worked with a defense agency to create training and tools currently used by soldiers fighting today’s wars. We also knew that that he and Betty liked to tell stories, but we did not know that they once won the National Storytelling Network’s Oracle Award. And we did not know that Frank was in the process of writing several stories of his own before cancer robbed him of his words, and that Tom Clancy had dedicated one of his blockbuster books to him.

Jim and I were silent as our motorcade slowly traveled from the chapel to Frank’s final resting place. The air was unseasonably warm; the sky threatened to rain, but never did. I watched the clouds race by as though they were reminding us how quickly time goes. Then Jim voiced what I had been thinking.

“I wish I talked to Frank more than I did at band rehearsal.”

“Me too,” I said.

“I don’t know why I didn’t,” my husband said. “I would have loved to talk to him about his military career.”

“And I wish I had gone to hear him perform with his storytelling troupe,” I said.

“Why didn’t we?” my husband asked.

As Jim’s question hung in the air between, us I thought about the time–soon after I became a hospice volunteer–that I read an obituary of a long-term patient. A nurse had clipped it out of the paper and tacked it to the bulletin board in our conference room. The patient lived in our hospice for several months, but I never knew that she was once a college professor, or that she played the piano and was a gourmet cook. Of course the nurse already knew that about the patient because they talked on a daily basis and, more importantly, the nurse cared enough to ask.

Back then I preferred to keep my distance from the patients I met because I was still coping with the pain of losing my dear friend Leslie and did not want to get close to anyone I knew I would have to mourn before long. Also, since most patients stayed in our hospice unit for only a few days before they went home or passed away, I had rationalized that there was not enough time to forge any kind of meaningful relationship. Sometimes my fear of grief still causes me to think and act like that.

With Frank, however, there were plenty of opportunities, and I regret that I decided long ago that other than band, he and I had nothing in common, so I kept my distance. I use that rationalization too often to mitigate loss, grief, and pain–the inevitable payoffs that come from investing emotionally in personal relationships.

As a hospice volunteer, I am reminded every week how fleeting this life is–something I thought I knew and knew better than many others. But as I rode in Frank’s funeral procession, grateful for what I learned about him that day, I wished I hadn’t taken this long to realize that getting to know someone like Frank, or any of my hospice patients, would only enrich my life no matter how little we might have in common or how much time we might have together.

Regret never fades, but in the long run, the memories of shared experiences and stories outlive any grief. I know that now. Frank knew that because he believed in the value of a good story. I learned at his funeral that he also believed there is an appropriate Gilbert & Sullivan quote for every occasion–something else I wish I had known about him. Betty chose this perfectly apt one from The Yeoman of the Guard to end Frank’s memorial service:

Is life a boon?
If so, it must befall
That Death, whene’er he call,
Must call too soon.

Devra Lee Fishman’s dear friend and college roommate, Leslie, died from breast cancer one month shy of her 46th birthday after a four-year battle with the disease. Being with Leslie and her family at the end of her life inspired Devra to help care for others who are terminally ill. Each week, she documents her experiences volunteering at her local hospice in her blog, Hospice Girl Friday.

My brother and sister-in-law are raising Hazel, a six-month old black Lab, for the Guide Dog Foundation. Part of her early training involves socializing her in as many public settings as possible, so I asked if I could take Hazel to the hospice with me. My brother was confident Hazel would easily transition from carefree puppy to serious ‘working’ dog when she had on her yellow training vest, but I wondered how she would respond to the smells, sounds, and sights of the hospice and how the people there would respond to her.

As soon as Hazel and I walked into the hospice I introduced her to the staff. They greeted Hazel with wide smiles and high, breathy voices like they were talking to an adorable toddler.

“How are the patients today?” I asked.

“The woman in room two is a pickle,” the doctor replied, rubbing Hazel’s neck.

“A pickle?”

The doctor looked up. “You know, sometimes sweet and sometimes sour?”

“And today?”

“Sour,” the doctor replied. “She has been cranky with all of us. We were just talking about what else we might try.”

One of the nurses said, “She’s eating her breakfast now, but when she’s done do you think she could meet Hazel? Apparently she had three dogs when she was younger so Hazel might cheer her up.”

I did not plan to take Hazel to visit patients yet, but since the nurse asked I said, “Sure, just let me know when.”

I sat down at the desk and looked at the census. The ‘pickle’ was Dr. Ellen Kaye. 89 years old. Cardiovascular Disease.

Twenty minutes later the nurse approached me. “Dr. Kaye is ready and very excited,” she said.

I took hold of Hazel’s leash and told her we were going to meet Dr. Kaye. Hazel walked next to me with her head high and determined, like she knew this was important. I knocked on the door of room two and walked in. Dr. Kaye was sitting straight up in a chair next to the window with her hands flat on her lap and her eyes open wide, full of expectation. Her full-length bathrobe matched Hazel’s glossy black coat. Hazel started to tug me forward so I reminded her she was working. Hazel sat down next to Dr. Kaye and looked up at her as if to say ‘It’s okay, you can pet me now.’

Dr. Kaye leaned forward and stroked Hazel’s head.

“Your nurse said you had Weimaraners,” I said to get us started.

“Yes, three,” she said. “My dogs were the first to come over from Germany after WWII ended. They followed me everywhere. They do that, you know, Weimaraners.”

Dr. Kaye kept petting Hazel and looked up at me as she talked about her career, her many homes, and her travels. She told me her husband died of cancer almost 50 years ago and that she has lived alone ever since. She wished she could have a dog, but she knew she would not be able to take proper care of one. The whole time we talked Dr. Kaye’s eyes were bright and focused, her face animated. Occasionally she would pause to catch her breath, but other than that I could not detect any signs that her heart was failing. Nor did I see any of the sour pickle the doctor had described.

I have seen family members bring in patients’ dogs to visit, and I have always been aware of the many ways dogs can help calm and comfort people who are going through some sort of trauma. This was the first time I witnessed it first hand. I wondered how the nurse knew this might happen.

“I am sorry to interrupt,” I heard the doctor said from the doorway, “but I need to do a quick exam.” I glanced at the clock. Dr. Kaye and I had been talking for over forty-five minutes.

“Okay,” I said. Then I turned to Dr. Kaye. “Hazel and I will be here until noon. Ring your call bell if you’d like us to come back for another visit.”

“Thank you, dear,” she said. Then she smiled and leaned down to kiss the top of Hazel’s head.

The doctor found me as soon as she left Dr. Kaye’s room. “Devra, what you and Hazel did for Mrs. Kaye worked better than everything else we’ve tried. I had no idea how she would react, but her physical and mental demeanor brightened, which made it easier for us to take care of her. Thank you so much.” Then she looked down at Hazel and said, “Thank you, too, Hazel.”

Hazel locked eyes with the doctor, sat up a little straighter and wagged her tail, already looking like the professional service dog she is destined to become.

Every week I marvel at the way the hospice staff take care of their patients. I see them worry when traditional methods and medications are not effective, so I was happy to be a part of this week’s success story, especially since I originally thought going to the hospice would simply be good training for Hazel. The nurses seemed to think that Hazel could help some of the more difficult patients, and their instincts turned out to be right. Once again I drove home grateful for the privilege to watch them do anything and everything they could to make our hospice patients comfortable.

]]>http://www.saturdayeveningpost.com/2013/12/20/health-and-family/a-case-for-comfort-animals.html/feed2Hospice Girl Friday | ‘Putting the Patient First’http://www.saturdayeveningpost.com/2013/12/13/health-and-family/putting-the-patient-first.html
Fri, 13 Dec 2013 13:00:08 +0000http://www.saturdayeveningpost.com/?p=95358Devra finds herself in a potentially sticky situation that leaves her wondering: "Is there a proper way to do this…could I get into religious trouble?"

Devra Lee Fishman’s dear friend and college roommate, Leslie, died from breast cancer one month shy of her 46th birthday after a four-year battle with the disease. Being with Leslie and her family at the end of her life inspired Devra to help care for others who are terminally ill. Each week, she documents her experiences volunteering at her local hospice in her blog, Hospice Girl Friday.

Throughout most of the autumn we had a patient in room seven who came to us from home care and who stayed for almost two months. Her name was Bernice Stevens. 73 years old. Kidney Disease.

I did not meet Mrs. Stevens for the first month she was in the hospice unit because she always had family and friends visiting during my Friday morning shifts. As I made my rounds I could hear several voices in her room talking and laughing, so I never went in. Unless someone in the room rings the call bell or comes out to make a request or ask a question, I do not like to disturb the time the patients share with loved ones.

Finally during one of my shifts Mrs. Stevens received a phone call. We always have to check with the patients before transferring calls so I went to her room, knocked as I walked in, and introduced myself first to Mrs. Stevens and then to her visitors.

Mrs. Stevens was sitting up in bed wearing her own pink quilted bathrobe, round wire-framed glasses and a gold chain with a small cross hanging just below her collar bone. A cell phone was on the table next to the bed.

I asked her if she wanted to speak to her niece.

“Would you mind asking her if I can call back, darling?” Her voice was strong with a slight southern drawl.

“Not at all. Do you have her number?”

“Yes.” She nodded toward the cell phone. “And, thank you.”

I didn’t see Mrs. Stevens again until three weeks later. As soon as I walked in to start my shift, a nurse asked if I would sit with Mrs. Stevens for a while. “She’s changed over the last couple of days and seems a little agitated. If you could just sit with her until I can get her pain medication I’d really appreciate it.”

I dropped my bag and hurried to room seven. Mrs. Stevens was wearing a hospital gown and was curled on her left side, facing the window and taking short, shallow breaths. Her right hand clutched the rail of the bed. I pulled the chair up close to her and sat down.

“Hello, Mrs. Stevens. I’m Devra, the Friday morning volunteer, and I’m going to sit with you for a little while.” She looked up at me and fluttered her lips like she was trying to say something. I put my hand on the one that she used to clutch the bedrail, hoping that the physical connection would comfort her, and she surprised me by taking hold of my hand and giving a tug. I asked her if she wanted something. Her lips fluttered for a few more seconds and I finally realized what she was saying: “Read to me…read to me…read to me…”

I glanced around the room for a book. “All I see is the newspaper on your dresser,” I said, standing up, but she tugged me back down and started to flutter her lips again. “The Bible…the Bible…the Bible…,’ she whispered with little puffs of air.

“The Bible,” I repeated, stalling for time as I thought about where I would find one. I gently placed her hand back down on the bed. “I am going to the chaplain’s office to look for a bible.” And look for the chaplain, I thought to myself. Shouldn’t he be reading the Bible to patients? I’m Jewish. That must disqualify me in some way.

The chaplain was not in his office, but I did find a stack of bibles on his bookshelf. All of them had ‘Holy Bible’ written in large gold letters on the front. I grabbed one and hurried back to Mrs. Stevens, mentally preparing myself to sight read the Christian Scriptures. I wondered: Is there a proper way to do this…could I get into religious trouble? Then I told myself all that mattered right now was Mrs. Stevens. I’m sure anybody’s god would understand.

“Found it,” I said as I sat back down. Mrs. Stevens was facing the ceiling with her eyes closed so I leafed through the book, trying to find the Corinthians verse that I’d often heard at weddings. At least that one was familiar to me. As I searched I asked Mrs. Stevens if she had a favorite passage. She opened her eyes for a moment so I put the book near her hands. She flipped a few pages and flattened her hand on the open Bible. I picked up the book, took hold of Mrs. Stevens’ hand, and started reading. For several paragraphs I stumbled over unfamiliar words and names in what seemed to be a random passage about the types and costs of materials used to build a temple. Eventually my apprehensive voice gave way to one of conviction. Out of the corner of my eye I saw Mrs. Stevens turn her head to face me.

After a few minutes the nurse tiptoed in. I paused only long enough for her to say hello and give Mrs. Stevens her pain medication. Soon after the nurse left, I felt Mrs. Stevens’ hand relax as she drifted off to sleep. Just in case she could still hear me, I kept reading until her daughter walked in forty minutes later and asked to take over.

I left the room and found the chaplain, who had just returned from a memorial service. I told him about my experience with Mrs. Stevens because religion was, after all, his department. We shared a laugh as I confessed that I was nervous reading the Bible at first because I am Jewish, but then I realized that my religion didn’t matter. The chaplain smiled and said, “Devra, it’s not that your religion did not matter. In this instance, what mattered most is that Mrs. Stevens wanted to hear you read the Bible to her, and you did that.”

Devra Lee Fishman’s dear friend and college roommate, Leslie, died from breast cancer one month shy of her 46th birthday after a four-year battle with the disease. Being with Leslie and her family at the end of her life inspired Devra to help care for others who are terminally ill. Each week, she documents her experiences volunteering at her local hospice in her blog, Hospice Girl Friday.

I was raised Jewish and attended synagogue growing up. I still go to services on the High Holy Days of Rosh Hashanah–the Jewish new year, and Yom Kippur–the Day of Atonement, even though I have never completely connected to the religion. One of the beliefs of Judaism is that our fate is sealed in the book of life during the time between the two holidays, and as Yom Kippur ends we begin the new year with a clean slate after praying for forgiveness of our sins.

This year, Yom Kippur began on a Friday evening. Earlier in the day I went into the hospice for my usual morning shift. There were five patients, but one caught my eye–a man in room four named Asher Zinn. Fifty years old. Non-Hodgkin’s Lymphoma. Jewish.

When I walked into Mr. Zinn’s room he was awake, shirtless, and lying in bed, covered from the waist down by a sheet. I noticed that one of his legs was twice the width of the other, a common side effect of his cancer. A woman in her mid-fifties was sitting in a chair next to his bed and saying goodbye into a cell phone. She was wearing blue plaid pajama bottoms and a college sweatshirt, and she looked like she hadn’t had time to comb her shoulder-length, straight blond hair.

I introduced myself to both of them. The woman said hello and told me her name was Sarah.

“Wait, I need help with something else,” she said. “Yom Kippur starts tonight and we want to have dinner and services here.”

“Okay,” I said, “I can help with that. First, let me get the nurse.”

While the nurse was in with the Zinns, I found the hospice chaplain and explained Mrs. Zinn’s request. She needed a room for dinner, two candlesticks, and a space with a table to hold the services that her husband so badly wanted to attend. The chaplain suggested they could set up the ceremonial meal in a conference room just off the lobby.

I reported back to Mrs. Zinn and offered to show her the room. To make conversation on the way there, I asked her if they belonged to a local synagogue.

“Several,” Mrs. Zinn said.

As we walked I wondered, but did not dare ask, how long ago her husband was diagnosed. How long did they have to enjoy being newlyweds before their new dream life together became a nightmare? I could not help but think about my own marriage. Like Mrs. Zinn and her husband, my husband and I also found each other late in life and always say we will never have enough time together. Suddenly I was even more grateful for the five healthy and happy years we’ve had so far.

Mrs. Zinn spoke, bringing me out of my thoughts. “On Monday the hospital doctor said my husband might live 24-48 hours, max. But he wants to observe Yom Kippur. This is very, very important to him.”

When we reached the conference room Mrs. Zinn took a quick look around and nodded. I showed her the communal kitchen in the hospice unit and we cleared out a shelf in the refrigerator for the kosher food being delivered that afternoon. When we got back to the room the chaplain was there holding an electric menorah (an eight-cupped candle holder used for Hanukkah).

“This is the closest thing we have to candle sticks,” he said to Mrs. Zinn. “I’m afraid there is a law against lighting candles in the building. You can remove the lights you don’t want to use,” he said, unscrewing a bulb to demonstrate. “Also, you can use the chapel in the main building, which seats about 50 people. There is a large, crystal cross in the corner that we can cover with a sheet. No other religious symbols. Will that do?”

“That’s fine,” Mrs. Zinn said. “How will we get my husband there?”

The nurse, who was still in the room said to Mr. Zinn, “We can’t move you to a chair because your leg is too swollen, so we will have to roll your bed to the chapel for the service.” He nodded slowly in acknowledgement. The nurse turned to Mrs. Zinn and said, “I will make arrangements with his evening nurse.”

“Thank you,” Mrs. Zinn said to her. “Thank you all,” she said, looking to each of us.

“It’s our pleasure,” the chaplain said for all of us. I said goodbye and wished them all an easy fast, a traditional Yom Kippur greeting. As I left I felt envious of the strength of Mr. Zinn’s faith–so adamant that he observe Yom Kippur, knowing his fate was already sealed. I am not sure I would bother.

Later that evening, at my Yom Kippur service, I wondered if whomever was deciding my fate for the year took note of my good deed for the day, or if it did not count because I am not deeply religious. Then it occurred to me that I seem to believe more than I thought. I decided to pay closer attention to the words and the prayers the rabbi and the other congregants were reading aloud, and before the service ended I made a promise to myself to learn more about my religion this year.

The following Friday I found out that Asher Zinn had passed away the day after attending Yom Kippur services in the hospice chapel, his fate eternally sealed in the book of life.

]]>Hospice Girl Friday | ‘Survivor’s Guilt’http://www.saturdayeveningpost.com/2013/11/29/health-and-family/survivors-guilt.html
Fri, 29 Nov 2013 13:00:50 +0000http://www.saturdayeveningpost.com/?p=94945On the days when the patients are younger than I am, I marvel at the randomness...as though we’re all playing musical chairs, dancing around one moment and eliminated from the game the next.

Devra Lee Fishman’s dear friend and college roommate, Leslie, died from breast cancer one month shy of her 46th birthday after a four-year battle with the disease. Being with Leslie and her family at the end of her life inspired Devra to help care for others who are terminally ill. Each week, she documents her experiences volunteering at her local hospice in her blog, Hospice Girl Friday.

Before my friend Leslie died, I thought hospice was for old people with cancer. According to the Hospice Foundation of America, approximately two-thirds of hospice patients are over the age of 65, which means that one-third are younger than 65. And while many are diagnosed with cancer, I’ve seen just as many patients at my hospice with pulmonary or heart disease, neurological disorders, Alzheimer’s, AIDS, or complications from any number of health issues.

When I check the census at the beginning of each shift I get a quick overview of the current patients: their names, diagnoses, ages, and dates of admission. Also listed for each patient is the name and relationship of the main point of contact. All of this information is helpful as I prepare to make my rounds. I always look at the ages of the patients first, hoping to find that they are older than I am–preferably much older. That way I won’t have to think about my survivor’s guilt–how it could just as easily be me instead of them. But every week there is at least one patient my age or younger (I am 53), and every once in a while, all of the patients are. Those days are the toughest.

One recent Friday there were five patients: a 52-year-old woman with lung cancer; a 33-year-old woman in a diabetes-related coma; a 46-year-old man with HIV/AIDS; a 49-year-old man with end stage kidney disease; and a 51-year-old woman with breast cancer. I felt my stomach start to roil when I read the census. I would have preferred to stay at the volunteer desk and not see any patients for my entire shift, but I swallowed my survivor fear and made my rounds.

My first stop was room five, the woman in a coma. Her mother was there and said they were both fine for the moment so I moved on to the 46-year-old man in room six. He seemed to be sleeping so I tip-toed out and walked into the room of the 52-year-old woman with advanced lung cancer.

Her name was Laura, and she was sitting up in bed when I walked in. She was rocking back and forth with her palms on her lower back and watching The View on her small flat-screen TV. I read in the volunteer notes that she used to be a dancer; she looked tall, lean, and muscular, but she was also bald and jaundiced from her cancer and chemo treatments. If I didn’t already know her age, I would have guessed she was in her 70s. Cancer–or the treatment–does that sometimes. I noted a pile of peanut M&M packets on the nightstand next to her untouched breakfast tray.

“Peanut M&Ms are my favorite candy,” I said to break the ice after I introduced myself. Focusing fully on the patient was difficult because I kept thinking: She’s younger than I am. I could be in that bed.

Laura glanced over at the stash. “My boyfriend keeps bringing those because he knows I love them. I just don’t have much of an appetite anymore.”

I wanted to have more of a conversation with her, and asking about her boyfriend would have been my next move, but when a patient mentions some sort of physical symptom like a loss of appetite, it’s important to try to find out if he or she is experiencing any other discomfort. The nurses visit as often as they can, but a patient’s comfort level can change minute-to-minute so I always try to help by passing along any time-sensitive observations.

“How are you feeling otherwise? Are you comfortable?”

“Pretty much,” Laura said. “My back still really hurts.”

That explained the rocking. Back pain is a common complaint with lung cancer patients, but should be fairly easy to fix so I said, “I’m sorry to hear that. I’ll tell your nurse.”

“Why are you sorry?” she asked. “It’s not your fault. I’m the one who smoked.” She said this without the slightest note of self-pity or anger.

“Fair enough,” I said, trying to sound as neutral as she did. My ‘sorry’ was meant to be empathetic instead of sympathetic, but I knew to follow her lead and then drop it. There was a pause between us, and before I could stop it, a feeling of relief rushed in along with the thought: Maybe I wouldn’t be in that bed after all because I don’t smoke.

On the days when the patients are younger than I am, I marvel at the randomness with which we move through life, as though we’re all playing one big round of musical chairs, dancing around one moment and eliminated from the game the next.

On those same days I also feel a deeper empathy for the patients and their loved ones, and I’ve often sensed the same from the hospice nurses and doctors. I know that cancer, diabetes, HIV, and other diseases do not discriminate by age, yet sometimes I wish they did. I see too many hospice patients who just seem too young to die–possibly because I feel like I am too young to die–and it feels unfair that they could not find a chair when the music stopped. Then again, I have no idea what age is “old enough” to die, so I continue to work through my survivor fear and do my best to help all of the patients in my hospice find some comfort at the end of their too-short lives.

]]>Hospice Girl Friday | ‘The Power of Listening’http://www.saturdayeveningpost.com/2013/11/22/health-and-family/the-power-of-listening.html
Fri, 22 Nov 2013 13:00:02 +0000http://www.saturdayeveningpost.com/?p=94898It can be therapeutic for relatives of hospice patients to reminisce, so they can lock-in memories of better, healthier times.

Devra Lee Fishman’s dear friend and college roommate, Leslie, died from breast cancer one month shy of her 46th birthday after a four-year battle with the disease. Being with Leslie and her family at the end of her life inspired Devra to help care for others who are terminally ill. Each week, she documents her experiences volunteering at her local hospice in her blog, Hospice Girl Friday.

There was a woman in the hospice’s communal living room when I came in to start my shift. She was wearing navy blue sweatpants, a pale gray t-shirt and slippers. She was slumped on the sofa, facing the television but staring at something much further away. After I put my bags down under the volunteer desk I checked the list of current patients and then asked one of the nurses about the woman on the sofa.

“Her sister is in room three,” the nurse replied. “Fifty-eight years old. Colon cancer. They’ve both been here since yesterday morning.”

Once I settled in, I walked over to the woman and introduced myself. She told me her name was Mary.
“I understand you’re Ann Simpson’s sister,” I said as I perched myself on an arm of the chair next to her, careful not to assume she wanted company.

“I am,” she said as she sat up and straightened out her t-shirt, which had bunched up against the sofa behind her. “She’s my baby sister, and I’ve been taking care of her the whole time she’s been sick, which feels like forever. I’ve gone to every doctor’s appointment, every treatment, and now we’re here.” She swept her eyes around open space and then slowly shook her head.

“How wonderful you’re able to be with her,” I said, acknowledging that caregivers need to know someone cares about them and the effort they make. Mary looked back up at me and nodded. “Yes,” she said. Her mouth hung open like she was going to say more, but she didn’t.

“The nurse said Ann is resting comfortably,” I said. “How are you holding up?”

“I’m fine,” Mary said. “Tired. It’s been a long six months since Ann was diagnosed. And tomorrow is my 60th birthday. I’d hate for her to die on my birthday, but if she needs to go, she needs to go. She’s been through enough.”

Since she answered more than my question, I slid down into the chair and waited for her to continue.

“Ann’s husband is coming over later this morning so I can go home and get some stuff done,” Mary said. “Then I’ll be back to spend the night again.”

I wondered if she wanted to talk some more, so I searched around for a question that would open up more of Ann’s story. “What kind of work did Ann do?” I asked.

“She was a school teacher,” Mary said. “Fifth grade. She loved her kids and her kids loved her. Never had children of her own, so they were her family.” I nodded slowly as she spoke. She continued, staring at a space somewhere between the two of us. The words spilled out as though they had been backed up for a while.

“I work for the power company. My manager has been very understanding and has given me a lot of flexibility so I can take care of Ann.”

We sat and chatted like that for about fifteen minutes. I would have happily stayed there for my entire shift, but Mary said she wanted to check on Ann. I stood with her and told her I would stop by in a little while to see if she needed anything. Maybe I could get her to tell me more about her sister, I thought.

I have always enjoyed learning people’s backstories, but once I became a hospice volunteer I made it a point to learn as much about the patients from their loved ones as I could. Talking about people who are dying helps us to lock in memories of who they were–and who we were–when everyone was healthy and living their everyday lives. I learned this from the experience I had with my friend Leslie, who died in 2006.

I will always cherish the time I spent with Leslie during the four years she fought breast cancer, and it was my honor to be with her at the very end of her life. But when I talk about her now I have to work hard to replace the picture of her as she lay on her death bed with one of the gazillion (she loved to exaggerate so Leslie, this one’s for you) mental images I have of who she was during the nearly 30 years that we were friends. Maybe we’re programmed to more easily recall extraordinary moments, such as the birth or death of a loved one, but I think it’s just as important to remember the string of ordinary images and moments that tell the whole story of how we lived. I want that for myself, and I want that for the people I meet in the hospice.

I made my rounds later in my shift, and when I walked into room three Mary was sitting in an armchair next to Ann’s bed and holding her hand. Ann seemed to be sleeping comfortably, but the blanket covering her moved only slightly as she took shallow, infrequent breaths, indicating that she was nearing the end. Mary watched me as I studied her sister. I wondered if it would help Mary to talk more about Ann, so I asked, “Were the two of you close growing up?”

And with that question, Mary took me back to their childhood (Ann taught Mary how to ride a bike), their weddings (they were each other’s maid of honor) and their families (they’ve lived on the same street for 25 years). Mary also told me she always thought Ann was the prettier one, and she said that the two of them took care of their mother together, who died from Alzheimer’s just last year.

I stayed with Mary and Ann until my shift ended, grateful for the picture Mary drew of the ordinary moments they shared throughout their lives. I hope talking about Ann with me will help Mary bring those memories forward every time she thinks about her beloved sister.

]]>Hospice Girl Friday | ‘Coming Home to Say Goodbye’http://www.saturdayeveningpost.com/2013/11/15/health-and-family/coming-home-to-say-goodbye.html
Fri, 15 Nov 2013 13:00:20 +0000http://www.saturdayeveningpost.com/?p=94577This week, Devra remembers a family whose 27-year-old son chose to have his life support removed and end his battle with terminal cancer.

Devra Lee Fishman’s dear friend and college roommate, Leslie, died from breast cancer one month shy of her 46th birthday after a four-year battle with the disease. Being with Leslie and her family at the end of her life inspired Devra to help care for others who are terminally ill. Each week, she documents her experiences volunteering at her local hospice in her blog, Hospice Girl Friday.

Our volunteer supervisor sent out an urgent request on a Tuesday: ‘We have a rather unusual situation in the IPU tomorrow, and I’m looking for someone who can cover the 12-3 shift…we will receive a patient via air transport from Atlanta. He is from this area and his parents would like to have mechanical ventilation stopped closer to home.’

I could not recall a patient on a ventilator in the six years that I have been a volunteer so I did not know what to expect. I only knew that help was needed. I responded immediately:‘Yes, I am available.’

My supervisor sent more information: The patient was a 27-year-old man being treated for cancer. Chemotherapy paralyzed him and he was put on life-support. The family could not find a local hospital willing to admit him and eventually they were referred to our hospice.

On Friday mornings the inpatient unit is quiet with only a few staff taking care of patients and paperwork. When I arrived for my special Wednesday shift, there were additional nurses and higher-level administrators preparing for the arrival of the patient and his family. I saw small teams of people discussing and rehearsing the plan for the day, carefully reviewing checklists like pilots before a flight. The atmosphere was tense.

My supervisor was standing with the regularly scheduled volunteer at the front desk. I walked over, said hello and asked for an update.

“The plane is delayed,” she said. “We’re expecting the patient around 2 p.m. His father is traveling with him. His mother and siblings should be here any minute.”

“What is our role?” I asked, nodding my head toward the other volunteer.

“One of you will need to man the desk and help out with the rest of the patients,” she said. “The other might be called on to assist the family when they arrive. We’re not exactly sure what to expect.”

I was about to say ‘I’ll help with the family’ when I heard the other volunteer say it first. I was disappointed, as though I were now less important. I wanted to be a part of the experience, not a spectator, and then I remembered that the other patients needed support too.

Just as we finished our conversation, the front door opened and a woman and two teenage girls walked in. The woman was tall, slim, and looked like she was in her mid-40s. She walked up to the desk, smiled and said she was the patient’s mother. She then introduced her daughters and explained that two older sons were on their way from the college they attended together. She was calm and composed, as if she were checking in for a doctor’s appointment. I said hello as the other volunteer walked around the desk to greet them and offer a tour of the facility, which the mother accepted. Her daughters shuffled behind her.

A little after 2 p.m., the patient arrived. As he was wheeled in on a stretcher I was surprised to see that he was conscious and alert. I had to catch my breath as I registered that the decision to remove the ventilator might have been his.

I know the patients I see are terminal and have opted out of curative medicine and heroic measures. For them the dying process takes a natural course as the body shuts down, and hospice care keeps them comfortable during that time. While this young man was just as eligible for hospice care as anyone else, I was moved by his choice to remove his life support, and wondered how his parents—or any parents, for that matter—would cope with that decision.

Once I regained my composure I looked up and saw the patient’s father talking to the mother. He was older, heavier, and used a cane to walk. His sons must have slipped in quietly, because the patient’s four siblings were now sitting on the matching sofas, each pinned to a corner like they were trying to disappear into the cushions. The father broke away and went into the patient’s room. The mother sat down in a chair between the two sofas with her back to me.

“Okay so we’re here to say goodbye to Michael,” she said, scanning the sofas for a connection. No one looked up, but the younger girl started to cry. She hugged herself.

“I need you to be strong and remember we are a family. We will get through this together,” the mother continued as she looked from child to child. Still no eye contact. The crying turned into sobbing. The mother kept talking.

“No one wants Michael to suffer, right? This is his decision and we have to respect it. He is never going to get better, remember, he has cancer.” The sobbing continued as the girl covered her face with her hands. I walked over and placed a box of tissues next to her. The other three children sat as rigid as the furniture.

I hurried back to my desk to try to separate myself from their pain, but the girl’s sobbing was inescapable. I turned toward the nurses and other hospice staff and saw that we were all fighting back tears. None of us spoke while we listened to Michael’s mother try to console her children.

About 20 minutes later another volunteer came in to relieve me. I did not know when Michael’s procedure would begin, but I was grateful to be leaving before it did. (I learned that the ventilator was removed that evening; Michael passed away about 18 hours later.) I was surprised and disappointed that the situation and the family’s grief were too much for me to bear. I thought I was stronger and more able to step outside of my own emotions to help others deal with theirs.

I called my mother on my way home from the hospice. She’s always said that losing a child is every parent’s nightmare, and I wanted to tell her that even though I am not a parent, I finally understand what she means. She told me how precious life is and how lucky we are—my parents, brothers, and I are all alive and well (knock on wood). That day, just hearing my mom’s voice soothed me, as it always has. I hope Michael’s parents, brothers, and sisters find a way to comfort each other, too.

]]>Hospice Girl Friday | ‘Just Being There’http://www.saturdayeveningpost.com/2013/11/08/health-and-family/hospice-girl-friday-just-being-there.html
Fri, 08 Nov 2013 13:00:29 +0000http://www.saturdayeveningpost.com/?p=94476Attending to the terminally ill becomes personal for Devra when a friend from her community band is diagnosed with inoperable brain cancer.

Devra Lee Fishman’s dear friend and college roommate, Leslie, died from breast cancer one month shy of her 46th birthday after a four-year battle with the disease. Being with Leslie and her family at the end of her life inspired Devra to help care for others who are terminally ill. Each week, she documents her experiences volunteering at her local hospice in her blog, Hospice Girl Friday.

I’ve been playing clarinet in a community band for 20 years. We rehearse Wednesday evenings for two hours in a local high school and perform in retirement homes and parks every other month. There are no auditions required and no age limits, so we have members who are just out of college and people who recently retired and started playing their instruments after a 50-year career hiatus.

When I first joined the band I was working full-time and I rushed to get to rehearsal every week. Other than the rest of the clarinet section and a flute-playing friend I had recruited, I didn’t know anyone else’s name. There wasn’t time to socialize during rehearsal, and I didn’t stick around afterward because I needed to get up early for work the following day.

That all changed when I stopped working and could linger after rehearsal to chat with some of the other musicians. I learned that a clarinet player who sat next to me for more than 10 years was a former nuclear physicist, and one of the trombonists—Frank—once commanded a submarine and was married for more than 40 years to Betty, a French horn player also in the band.

When I got married I encouraged my husband Jim to dust off his trumpet and join the band, which he did in the fall of 2011. Jim introduced himself at his first rehearsal (a band ritual) and announced that he was married to me. This seemed to delight Frank so much that he made his way over to Jim that evening to share stories about being happily married to another musician. Often Frank, Betty, Jim, and I would walk out to our cars together after rehearsal chatting about superficial stuff like the weather, a recent concert we played, or our new conductor’s sense of humor.

Last summer Frank was diagnosed with inoperable brain cancer. He underwent chemotherapy and for several months and it seemed to keep the cancer at bay, but earlier this year we watched Frank get weaker and thinner. He still came to band, but talking was difficult for him, and then impossible as the cancer affected his ability to speak. At rehearsal about a month ago, I looked over and saw Frank slumped in his chair with his trombone across his lap while the rest of his section stood and played the final ‘big brass’ strain of Sousa’s “Stars and Stripes Forever.” When Jim and I were leaving that evening we noticed Frank shuffling behind a walker with one band member carrying Frank’s trombone and Betty guiding him to their car.

I know from my hospice volunteering and from spending time with my friend Leslie at the end of her life that being a caregiver can be physically and emotionally draining, so when I got home that night I sent an email to Betty saying just that. I offered to come over and stay with Frank while she ran errands or took a walk. I told her I knew we weren’t close friends, but we were part of the same band family and I hoped she would take me up on my offer. To make it easier for her to accept, I suggested a few specific dates and was delighted when she replied to my email to lock in a time. In her note she told me she was grateful for the chance to go to the mall in order to have Frank’s cell phone transferred over to her, a seemingly mundane task that she hadn’t been able to do because Frank was no longer able to walk on his own.

Jim wanted to come with me. I told him that, according to Betty, Frank would likely be sleeping when we got there since we would arrive just after a visit from his hospice nurse. When we arrived, Frank was sitting on their sofa with the day’s newspaper draped in his lap. He gave us a weak smile when we greeted him, and then a gauze curtain dropped behind his eyes as he tried and failed to stay focused on us. As soon as Betty left, he nodded off and slept until she returned two hours later. I gave her a hug when we said goodbye, and she fought back tears as she thanked us for coming over.

That evening I told Jim I was glad he came with me. I liked having him there and I believe Frank did too. Jim said, “I know you’re around people like Frank every week at the hospice, but I was kind of scared. I’m not used to being with people who are sick like that, and I don’t know what to do or say.”

“I’ll tell you a secret,” I said. “I’m scared too. Every time I go into a patient’s room I get nervous. And today, for a split second as we walked into Frank and Betty’s house, I felt that old familiar flutter of fear that I am not qualified to be around someone who is terminally ill. But I’ve learned that simply showing up and saying ‘I am here with you’ is all that a patient or their loved one needs to know they are not going through this horrible thing alone. You did that today for Frank and Betty.”

“Wow,” he said, “I never thought about it that way.”

Frank passed away two weeks after our visit, and Betty came to band rehearsal the following Wednesday. During our break I went over and sat quietly next to her as people stopped to chat and pass along their condolences. I wanted Betty to know that she was not alone in that moment, even though she was surrounded by our bandmates. As I left to go back to my seat, I offered my help again and this time she said, “Maybe in a couple of weeks we could just get together and talk.”
I’ll be here for her whenever she’s ready.